Monday, March 25, 2013

This morning, I gave my first public testimony to the Health
and Welfare committee of the Idaho House of Representatives about S1114, a bill
that would consolidate currently fragmented mental health services into
regional health boards with increased local authority.

This sounds like a good
thing, and it is, as a 2008 WICHE report demonstrated.

So why was I there to oppose the bill in its current form?

Like all issues related to mental health and public
services, it’s complicated. My primary reason for opposing the measure was its
source of funding for those regional health boards. Rather than seek new appropriations, Idaho Behavioral Health Director Ross Edmunds proposed shifting funds from a Children’s Mental Health surplus.

Wait, hold on. Children’s Mental Health has a surplus?!?

The problem (and no one disagrees with me) is this:
currently, the only way for children in Idaho to get access to mental health
services is to be on Medicaid or to commit a crime. Yep, you heard me. If your
kid needs resources, you have to charge him or her with a crime.

The criminalization of mental illness, especially in children, is just flat out wrong. It's bad public policy, and it ends up being costly and dangerous.

Here’s my direct testimony to the committee:

When my 13-year old son was admitted to Intermountain in
December 2012, he screamed at the police officer who was trying to help him, “I
wish I had a knife so I could run at you and you would have to shoot me.” I
will never forget the look of horror in that brave officer’s eyes.

Later that week, my son’s social worker called and
recommended that I press charges against him to “get him back in the court
system so he can get the services he needs.” I am fortunate to have a good job
with health benefits, but many of the services my son needs, like PSR and
Occupational Therapy, are not covered by my insurance.

In “off the record” conversations over my many years of
interactions with the Department of Health and Welfare, well-meaning social
workers have suggested that it might be better for my son if I were a so-called
“welfare mom” because I could get better access to services.

I realize that the focus of SB1114 is on adult mental
health. But the lack of community support for parents of children with mental
health concerns means hours of missed work, unpredictable schedules, the
constant fear of a telephone call from the school, thousands of dollars in
medical bills for services that aren’t covered. My family suffers. My other
children suffer. And my son will be an adult all too soon.

We need a system that is proactive rather than reactive. The bill in its current form is still crisis-based
and does not really address the needs of children with mental illness in Idaho—in
fact, it actually takes money from Children’s Mental Health to pay for
reorganization of regional health boards, at a time when many parents, like me,
are told that the only way they can access help is through the courts. But I
believe that by focusing our efforts on early diagnosis, intervention, and
ongoing treatment for our children, we can save money and lives.

After hearing my testimony and the testimony of a NAMI
representative and mother Kathy Merce; Howard Belodoff, the lawyer who has been
prosecuting Idaho’s landmark children’s mental health case Jeff D. for 33 years, and Jim Baugh, Disability Rights Idaho Executive Director, the committee voted to send the bill to General Orders for
further review.

And here’s why it’s complicated. In drafting this bill, Ross Edmunds has done an
incredible job with limited resources. S1114 is a baby step, to be sure. But it’s
a baby step in the right direction, creating greater efficiency, providing more regional control, and improving access to resources for people with mental illness in crisis. Sending the bill to General Orders rather
than approving it as it stands runs the very real risk of allowing this
important legislation to die on the House floor.

So I left the House today feeling both glad and anxious. I’m
glad that my voice could be heard and that I could share my very personal concerns with the way we treat mentally ill children in Idaho. But I’m
anxious that because I spoke, in the end, nothing will happen.

Tuesday, March 5, 2013

My Statement to the U.S House of Representatives Committee on Energy and Commerce

On December 14, 2012, two days after I placed my
13-year old son in an acute care mental health hospital, the world
changed. The night of the Sandy Hook
shootings, I wrote a blog post entitled, “Thinking the Unthinkable,” which
included the shocking statement: “I am Adam Lanza’s mother.”

I’m not Adam Lanza’s mother. I’m Michael’s
mother. I love my son. But he—and I—and
other parents and children like us—need help. Like many children with mental
disorders, my son has been diagnosed with several conditions. Michael has taken
a cornucopia of pharmaceuticals to try to control his rages. We have not yet
found a combination of treatments and medications to manage his condition.

When I asked Michael what he wanted me to say to
you, he said, “Tell them I’m not a bad kid. Tell them I want to be well.”

Michael is not a bad kid. Neither are the millions
of other children who have diagnosed mental disorders in this country. And yet we continue to manage mental illness through
the criminal justice system. Too often, the only way loving parents can get
access to much-needed services is by having their children charged with a
crime.

My son Michael entered the juvenile justice system
just one month after his eleventh birthday. While on probation, he received an
array of social services including therapy and psychosocial rehabilitation,
which taught him coping strategies. But once he completed probation, those
services went away.

Before my blog went viral, I thought I was the only
mother in America who was living in this kind of fear. But I learned I’m far
from alone.

Parents like me live in all kinds of fear. We live in fear of
stigma—will my child be bullied for being different? Will my child be a bully? Will
I be blamed for my child’s explosive behavior?

We live in fear of that unpredictable behavior—how
will I know if my child is going to explode? What can I do to keep my other
children and myself safe? What about his school and the community?

We live in fear of the future—what will happen when
my child turns 18? Will my child harm himself or others? How will I pay for all
the services I need to keep my child functioning?

Parents like me are struggling, physically,
emotionally, and financially. And mental illness is still so hard to talk
about, because the stigma—for parents and children—is real. But as long as
parents continue to suffer in silence, the magnitude of this problem will only
be recognized after tragedies like Newtown.
It’s time to talk about mental illness—and it’s time to act.

What do parents like me need from you? We need access
to community-based resources. We need early and consistent behavioral
intervention. We need increased funding
for the Individuals with Disabilities Education Act, as well as funding for
school counselors and behavioral interventionists. We need increased research
funding for effective treatments. And most of all, we need a national
commitment to end the stigma that surrounds mental illness. As long as we keep
treating mentally ill children—and adults—in prisons, it will be difficult for
us to achieve true parity between physical and mental health.

Mental health is truly a bipartisan issue—a problem
that keeps millions of American children and their families from enjoying
“life, liberty, and the pursuit of happiness.” As a nation, we must explore
creative and brave ways to provide a better life for children, families, and
communities.

About Me

Liza Long, aka the Anarchist Soccer Mom, is a writer, educator, mental health advocate, and mother of four children. She loves her Steinway, her husband, her kids,and her day job, not necessarily in that order. Her book "The Price of Silence: A Mom's Perspective on Mental Illness" from Hudson Street Press is available in bookstores and online. The views expressed on this blog are entirely her own and in no way reflect the views of her employer (or anyone else, for that matter).